Diagnosis Update

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What I Said Then:

Today marks 3 weeks since I first went to doctor at Christine’s urging with a cough. 3 weeks since I was told that that I have cancer.

I’m going to take a break here from the time-line of our riveting and unraveling blog saga to give some current news updates.

We finally received the pathology results back on Friday afternoon and it indicated that in fact I have Hodgkin’s Lymphoma (or Hodgkin’s Disease). We had initially been expecting a return of non-Hodgkin’s but in someways the actual diagnosis is better than the expected one. But in other ways it’s not.

For starters Hodgkin’s Lymphoma is one of the most curable forms of cancer. This is an important distinction to make, it’s not just treatable its one of the most curable forms of cancer. As in: one and done, if we get it now, and if stays away for a few years, it’s my understanding that there is something like a 90% chance that we’ll never, ever hear from it again!

Hodgkin’s most often strikes people in their late twenties or early thirties. Christine and I have already been introduced to 2 people our age who have already had Hodgkin’s Lymphoma (past tense). As we already know its very treatable, but one reason that it’s so treatable is because it tends to be a very aggressive form of cancer and as such responds well to treatment. The downside to this, is that since it is more aggressive, it must treated more aggressively. Rather than a 3 week cycle of chemotherapy, I can now look forward to a 2 week cycle.

I haven’t had the chance to get into the details of the chemotherapy cycle (and to be completely honest I hardly know myself what to expect at this point) but I know that every 2 weeks I’ll be going in for a dose of chemotherapy which is essentially a cocktail of several drugs given intravenously to attack and destroy cancer cells. It kills a lot of other cells in the process The body then spends the next two weeks “recovering” and rebuilding (read: mostly throwing up) and we start all over again. Huzzah!

I’m getting a little bit ahead of myself at this point, in terms of the planned narrative that was originally being laid out in these blog posts, but this next bit of news is sort of a game changer so I’m going to skip ahead a few days and try to catch everyone up to speed in order for this to make sense. (What I’m skipping is our first meeting with Oncologist and a few other interesting (or not) tests. At some point I’ll go back and tell those stories for the completion-ists  out there who “gotta catch ’em all” and want the whole story)

So, on the Thursday following the Monday surgery I had what was is called a PET Scan. This is a test designed to visually show areas that are effected by cancer. This test takes advantage of the fact that cancer cells are highly metabolic (as does chemotherapy for that matter). Cancer cells can grow and divide up to 20 times faster than most other cells in the body. For the PET scan, I fasted for 12 hours and then had a radioactive glucose (sugar water) injected into me. The cancer cells absorb this glucose more rapidly than other cells and when the machine scans you it takes pictures of the radioactive areas of your body. In short, the areas of the body that are glowing brightly in the test results are cancerous.

The day after the test we received a call from the oncologist and the results of my PET scan (I haven’t actually had the chance to see them, but I hope I eventually will) were pretty much as expected. The tumor in my chest and the lymph nodes in my neck showed up the brightest. However, there was an area near my lower vertebrae that appeared in the test as dim glow. She indicated to us that this was unexpected, but that she wasn’t overly concerned about it as it didn’t look like the rest of the results. She felt that it was probably unrelated, but as it was important to get the full picture of what is going on in my body she ordered an MRI for me.

If anyone had MRI on their Cancer Test BINGO! Card, be sure to mark it off it now!   To recap in order: X-Ray, CAT Scan, Lymph Node Biopsy, Bone Marrow Biopsy, PET Scan, MUGA Scan, and now an MRI!

The MRI took place just this Wednesday and took about 45 minutes. I understand that a lot of people can get very claustrophobic during this test and it’s easy to see why. But for me, I just had a hard time lying perfectly still for 45 minutes and got pretty fidgety during the last 15 minutes or so.

We got the MRI results at the same time that we learned it was Hodgkin’s Lymphoma. It turns out that the area which showed up dimly on the PET scan is in fact cancer. This involvement of the thoracic vertebrae means we’ve received FREE UPGRADE to Stage IV cancer, with all right and privileges!

The biggest change is that we can now expect that I’ll be receiving chemotherapy for 6-8 months (rather than the initial 3-4 that we were expecting with non-Hodgkin’s lymphoma) and additionally, like I said, I’ll now be doing chemo therapy treatments every 2 weeks. It’s faster, more intense, and longer. But it should have a better and more permanent outcome in the long run.

Finally, the last bit of news. I start chemo on Tuesday. But more on that tomorrow.

If you have any questions at all about this change of diagnosis, please feel free to contact me or ask them in comments below, and I’ll address them as I can.

What I Say Now:

Updated one year later – October 4, 2011

I remember EXACTLY where I was while I took that phone call from my doctor.

I was at home, and took the call sitting at the dining room table. Sitting on near the sliding glass door, with my back to the kitchen. The dog was outside, looking in at me.

I really didn’t react emotionally to the news because I was intensely focused on writing everything down and not missing anything (probably one of the reasons that I remember it so clearly. That, and it was a pretty momentous call). Normally I would rely on Christine in these moments, but she had only recently started going back to work, so I was on my own and I wanted to be sure that I didn’t miss any of the key new information that I was getting. And there was a lot of it.

New diagnosis. New treatment plan. A more aggressive staging. And some action items for me to do in order to make an appointment to have a chest port put in and to get chemo started.

After hanging up with her I called Christine. When she got home shortly thereafter we started making calls to the rest of the family. If I recall correctly, they all took copious notes on the new information as well.

This also marked a key moment in my Blogging. Up until that point I was speaking in the past tense about the events that happened in the previous weeks, but with the new information I switched into the present. Because of that, there were several things that I never wound up talking about, that I still need to go back and tell at some point: MUGA Scan, the Bone-Marrow Biopsy process, MRI, etc.

SO, it was a good deal of new information for everyone to wrap their heads around. But in the end it all wound up to be pretty good news. Yes, it was a more aggressive form of cancer. Yes, it had progressed farther than we thought. And yes, it would be a longer and more frequent form of chemo. BUT (and this was and still is a big “BUT”) I now had a shot at getting into that club of over 88% of the people who are diagnosed with Hodgkin’s and beat it.

So far, so good! As of this writing I had 2 of my “every 3 month” follow-up CT Scans. I’m on my way!

Change of Plans … We’ve got a bleeder!!

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What I Said Then:

Just when we think we know what to expect, and even when we expect the unexpected, the unexpected happens and changes our expectations. I award 2 Blog-Points* to anyone who made it through that sentence in one take without slowing down or furrowing their brow.

Today was supposed to be a big day, I was supposed to have an IV Port installed in my chest (it’s pretty much what it sounds like) and then have my first chemotherapy treatment. Neither of those thing are happening today, though we are still meeting with the oncologist.

I had a blood draw on Friday in anticipation of my IV Port installation procedure. Part of the purpose of the test was to ensure that my blood clots normally. Turns out it doesn’t.

The PTT Test (or Partial Thromboplastin Time) indicates the time that it takes your blood to clot. A normal result is 25-35 seconds. My result was 54 seconds.

The doctor asked me if I had a history of bleeding, or if I had ever noticed that my blood took a long time to clot. I didn’t have much to offer since I’ve spent most of my life trying to avoid cutting myself. It’s just a general policy that I’ve had, and it’s served me pretty well so far. Additionally, in past when I was bleeding, I can’t say that I ever took the time to grab a stopwatch. ‘Cause… you know… I’m bleeding.

So, instead of going forward with the procedure today and starting chemo I am having a number of additional blood draws to test for a “bunch of other stuff” (I think that’s the scientific term) to try and figure out why my blood isn’t clotting normally.

When I told my parents of the change in plans my mom let me know that her blood has always clotted slowly and that there is a history of hemophilia on her side of the side of the family. So maybe that’s just the way I’ve always been and I’ve never experienced a traumatic enough injury for it to have ever been noticed or documented? That’s what I’m hoping for.

We’ll find out what’s going on and we’ll update you whenever we have a new time line in place for starting treatment. Probably later this week, or early next week.

*(Blog points cannot be redeemed for cash. Must be 21 or older and must have valid photo ID. Cannot be combined with any other offer or promotion. Non-transferable. Offer void if sold. Points must be earned within 24 hours of initial Blog post. Points are not real.)

What I Say Now:

Updated 1 Year Later – October 5, 2011

I still don’t really know what to say about that failed blood clotting test. It was such a blip that I had actually forgotten about it until re-reading it here.

When we met with the doctor a few days later I told her what my mother had said. She was intrigued, but said that I would have known by now if I was a hemophiliac. And that was that.

We never really talked about it again with my doctor, and after two chemo treatments in my arms (one left, one right) we just moved forward and put the port in. I don’t even recall whether or not I did another clotting test.

One thing was for sure though. You can never know what to expect with cancer. It became a theme once I started chemo as well. Every treatment was different, in the way that I reacted, and in the way my body responded. We would try to prepare for things, but it was rarely ever the same experience twice.

Expect the Unexpected!!

Today is the day!

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Just as rapidly as things can derail, they can turn around and get right back on schedule.

Today I start chemotherapy.  We’ll be checking-in at 1:30 p.m., and after about an hour of paper work and prep, I’ll start to receive my first infusion of chemotherapy drugs.

I’ll be doing this first dose without the chest port, and will receive it through an IV in my arm. The oncologist indicated that this will be fine as the damage to these smaller veins is cumulative and that one dose isn’t going to cause any problems.

In the meantime we continue to wait for the results from the blood tests that were ordered after it became apparent that my blood doesn’t clot normally. Early indicators suggest that it may in fact turn out to be genetic and just the way that it is. They took my silly “non-clotty” blood and mixed it with some “healthy blood and plasma” and in one test it brought the results down to a normal level. But in another test it reduced the clotting time, but was still much higher than average.

I was having trouble understanding what the problem was. In my mind I thought it would be a good thing that my blood doesn’t clot to easily as it would prevent it from clotting around the  semi-permanent catheter that’s going to be inserted into my vein. But I guess I was missing the point. The problem is that they are hesitant to tap into one of the largest veins of the body when they know that my blood isn’t clotting normally. Because of the location of the vein it’s not something that they just can just apply pressure to in order to stop any bleeding that may occur. And apparently its a “big important vein” that you don’t want to be bleeding out of.  Or whatever.

We met with the oncologist yesterday, and I got to see my PET Scan and MRI results for the first time (Spoiler Alert: I have cancer). We’ve been most curious about this whole “involvement of the lower vertebrae” that she had told me about. I must have misheard her because now that I’ve seen it, I’d say that it’s more in the mid to upper spine than anything else, but I’m not a doctor. It’s pretty small and you can see in the MRI images that it’s really just starting to form on less than a third of the surface area on one of my vertebrae. And as was confirmed in the Bone Marrow Biopsy (a story that I still need to share at some point) it does not appear to have penetrated the bone in anyway.

The good news is that since it’s so small and just starting to get established, it should be one of the first areas to respond positively to the treatment that we are starting today. It feels to me like another sign that we caught this in time to make a huge impact on the course of treatment, and that things could have been much worse had I waited longer before going in to see someone.

Along those lines I asked for some clarification about the change in staging. This tiny little nothing of a baby upstart tumor took me from Stage II to Stage IV, which seems like a bit of a diagnosis over-reaction to me. To me it seems like it should be a Stage III.5 or maybe even a II-and-a-half. She told us that there is actually some debate about this in the medical community and that some people would look to call it a Stage II BE. I told here that I was one of those people then, because that sounds MUCH better to me. I get the impression that she’s in the other camp though. And apparently I’m not a doctor.

But yeah, chemo tomorrow.

(Note: For those of you paying real close attention: I’m switching to the present and future tenses here. This may or may not surprise you, but I do tend to write these the night before and not around 4am when they are posted so that our East Coast fans can get their weekday morning dose of “Happy”.)

I really feel that I’ve kept myself in a really good place for the last three weeks now but tomorrow has me completely terrified. There is just no other way to put it.

All of this talk about this being “life-changing event” and about “how hard it’s going to be” has been just that, talk. The last three weeks have just been a build-up to tomorrow. Tomorrow is when this journey really starts. Tomorrow is when I will get my real first taste of what my life is going to be for the next 6-8 months.  Tomorrow is when I will first be tested and I’ll find out if this positive outlook that I’ve had so far has all just been act. Tomorrow I become a cancer patient.

Sitting here on the night before, I’m already experiencing some nausea. It’s obviously not the chemo drugs yet, it’s just my nerves and my anxieties. The one constant in chemotherapy treatment is that EVERYONE reacts differently. I wish I could take comfort in that, but from where I’m sitting it just means that I can’t really prepare for it, or to know what to expect. I doubt it’s going to put “visions of sugar plums” in my head tonight, and I’m sure that I’m probably not going to sleep well tonight on this, the greatest of all Chemo Eve’s. (It’s a good thing I have this “humor” self-defense mechanism.  My subconscious must have thought I was getting to serious here, because that joke practically wrote itself before I even knew what was happening).

There is another side of me though. The side of me that is ready to start.

I don’t recall if I’ve mentioned this in the blog at all, but when I first posted my list of symptoms which took me to the doctor in the first place, I mentioned how they had all since disappeared. Well, the honeymoon lasted about two weeks and ended just this Thursday. The plus side of starting treatment tomorrow is that I do feel sick. It some ways it’s a blessing, I don’t know how I’d be able to get up and start this journey tomorrow if I felt well. And fortunately these symptoms are expected to subside very, very quickly and that I may never see them again after the first few days after treatment starts. So for all of the downsides to chemo I should feel better before I feel worse.

Here goes nothing!

One less chemo treatment to go!

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(Note to readers: Sometimes I post on the blog, too. If you’re looking for more of my posts, they can be found under the category “Stine Thoughts” on the list to the right.)

I’m happy to report that Brian made it out of his first chemotherapy treatment yesterday afternoon, and so far, it’s not as bad as we thought it was going to be! We have been told that his side-effects will get worse over the next few hours and days as the medication he was given through his IV wear off, and the next few days should be interesting to watch. The entire treatment took about three hours, but the nurse told us it will go faster once he has a chest IV port, and we get used to the routine.

The day started with us heading out on a few errands near the Group Health in Seattle, and then we arrived at the hospital a little early. That gave us time to head to the pharmacy to pick up the medication he will need today, and then we had a light lunch.

As we got closer to the treatment check-in time, Brian got more and more nervous.

I think he was seriously considering making a run for it in this picture.

"Maybe if I just sit here quiet and still, no one will make me actually go through with this." - Brian

Once we arrived at the “Chemotherapy Infusion Clinic”, a fantastic nurse with a New Zealand accent checked Brian in, gave us a tour, and started the process. Because Brian does not yet have a chest port (due to his apparent hemophiliac tenancies), the nurse started an IV in his hand, and we were off to the races!

After 5 minutes, he still has his hair. Win!

Cancer Patient? Or... um... cancer patient?

After 5 minutes of chemo, he still had his hair! Bonus!

We heard from several people who have been through this before that it is important he stay hydrated during the chemo treatment to flush his system as quickly as possible after treatment. Brian took this information to heart.

This is a photo for the "Health Matters" employee newsletter!

All of that hydration did as nature intended, and he ended up using the restroom facilities several times during the three hours we were there. This was a little awkward, because he had to roll a large cart of IV’s and equipment along with him as he went to the bathroom.

The fluid in the IV's runs right through him.

The fluid in the IV's runs right through him.

To start, they gave him an IV of anti-anxiety drug, and anti-nausea medication. This got him into a relaxed state of mind, and after 45 minutes of chemo, he ate a snickers bar while watching Cash Cab on TV. After an hour he took a nap, and slept through most of the rest of the treatment.

He slept solidly on the way home, and woke up long enough to get into the house and onto the couch. He slept on the couch until his sister Tanya came over at about 8 (hi, Tanya!), and then went back to sleep until about 10. Then he had some popcorn, watched TV, and went to bed.

So far, so good. He has several medications he has to take at various times over the next few days, but so far it’s not as bad as we were thinking. Of course, things will change as his body is subjected to more treatments, and after he loses his hair, and after he has had his immune system challenged for a while. Only time will tell how he reacts over the next few days, but I’m hopeful, and Brian is in good spirits.

I’ll post again soon, but right now I have to go cut up little pieces of cheese to hide his pills in.

The Morning After

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As Christine posted yesterday, I fell asleep during Chemo at about 4pm on the day of the first treatment (Wednesday). From that point forward Christine tells me that I was never really awake until for more than about 20-30 minutes at a time between then and when we went to bed at 10.

At 6am Nurse Stine woke me up to have me take my pills and have some food. The two medicines that I have been prescribed at this point are both antimetics  (used to treat and prevent nausea and vomiting). Twice a day for the first two days after chemo I’ll be taking dexamethasone. It’s a steroid used to treat a number of ailments, but it’s also pretty good at shutting down the vomiting center in the brain. On top that I have a prescription for Prochlorperazin, this is an additional “take as needed” for nausea. After a light breakfast in bed to go along with my “take with food” pills, I slept until about 11:30. So I think it’s pretty fair to say that I slept from 4pm – 11:30am. Good Game, Chemo! Good Game!

I’m writing this about 2:30 in the afternoon on Thursday and so far I have no problems or adverse reactions to the chemo. This is to be expected from what I understand, and that first day is generally a good day. The cancer cells are under attack and my symptoms are just about gone again. On top of that I haven’t experienced any nausea or discomfort yet, though we are by no means out of the woods yet.

The only side effects I do have right now are from the pills controlling the nausea and possibly from the chemo itself. A general cloudiness and slight emotional numbness. Just sort of that “I don’t feel like myself like of way.” But the feeling is minor, and if it is between this feeling or being nauseous all of the time, for now I’m picking this. Physically I feel little weak, but not to the point that I need help with anything (though its nice to have!). I notice that my hands are pretty shaky while I’m typing this, and I’m not really great at walking in a straight line from place to place when I’m walking. I’m not really walking slowly, but when I do, I don’t always wind up at the point that I was aiming for in the step in front of me. I sort amble like I were a little buzzed. But all in all, I really don’t have anything to complain about yet.

I haven’t really talked much about Chemotherapy  yet, mostly because I’m just learning myself. I’m on a cocktail of 4 drugs that are given intravenously every two weeks. Each drug does something different and goes about finding and attacking cells a little differently.  Once “cycle” of chemotherapy is 4 weeks. So Wednesday I was given dose 1A, then in two weeks I’ll be given (i think) an identical dose, dose 1B. Before the next cycle (cycle 2) starts we’ll be meeting the oncologist again, and she’s decide at that point whether to adjust the meds at all.

As for how chemotherapy works, I really only have a basic understanding   I have mentioned on several occasions that most of the cancer tests (like PET Scan) take advantage of the fact that cancer cells are highly metabolic and can multiply up to 20 times faster than normal cells in the body. Most of the chemotherapy drugs also take advantage of this and are designed to seek out and destroy quickly dividing cells. I could be wrong, but I think at its simplest level the drugs attack any cell that is dividing at that moment. And that by playing the odds, if it’s dividing, it is more likely to be a cancer cell than not. From what we were told on Wednesday, one of the drugs is actually some kind of “bio-marker” which tags certain cells and encourages the bodies natural immune systems to attack these cells.

The downside of this “scorched earth” style of chemical warfare is that the majority of the other systems your body take a hit as well, but its more devastating to the cancer cells and tumors. The systems within the body that are most notably effected are not surprisingly those systems which have higher rate of cellular turnover. Most parts of the digestive system: mouth, esophagus, stomach, intestines. The skin, and fingernails/toe nails. And of course the hair follicles. This leaves most cancer patients which rough, splotchy skin, no hair, miss-colored fingernails, and they are a little nauseous most of the time.

So the idea is hit you hard one day, then your body spends the next two weeks recovering. Then you hit you again. You take two steps forward, then one step back. And that hopefully which each step back, we’re killing more cancer cells than anything else, and that eventually the body will win this battle of attrition. But based on how I feel at the moment, for the sake of timing, I might just hang the “Mission Accomplished” flag above the couch now.

Now if you’ll excuse me, I need to wrap this up. Apparently Dr. Stine and I are still getting use to this whole “cancer patient and nurse” dynamic here, and after some miss-communication I may or may not have taken two of the pills that I was supposed to take one of. We called the pharmacist, and while it’s no big deal, I need to get this post all wrapped-up for tomorrow, because apparently I’m about take a little nap now!

Have a good weekend everyone! Check back on Monday to see if whether or not we were able stave off the nausea this weekend!